Category Archives: Involvement

So yesterday I trundled down to London for my last 2 days there before the New Year. I had 3 reasons for going; the first day I would be with Admiral Nurses LEAP group (Lived Experience Advisory Panel) and the following day with Young Dementia UK. My third was a tad random as I was having tea with Tom Pauk and Ian who wanted to discuss the possibility of having my portrait painted…….as you do…..😳🙈

Anyway the day didn’t start off quite as planned……..British Rail, in it’s wisdom had decided to release a whole new timetable……no problem, I thought, as I already had my tickets……don’t know what made me check the website the day before…..but…….my first train to Hull had disappeared😳 even though I’d booked that train🙄……

We usually have two trains into Hull at silly o’clock, 15 minutes apart, I’d booked on the second one that had magically disappeared and apparently no longer existed🤐. I went into my taxi people to book an earlier time only to be met with a gulp, a roll of the eyes and ‘Oh no not you as well’………of course everyone who had booked the later train now had to catch the earlier one, so no longer were taxi rides staggered…….poor taxi company had to call in extra taxi drivers to start early just because of the timetable changing………She said she would sort me out but not to panic if it was a tad late (they know me well) and sure enough it turned up on time and we grumpily trundled to the station (I must have had a driver who had to get up earlier than expected🙄

It was dark and cold on the station platform. Everyone in their own little world, many of us there earlier than expected……so what happened?…….the train was 20 minutes late….🙈later than even the original second train😏 which left us 2 minutes transfer time to the London train in Hull😫….

Anyway……..I managed to get the London train by getting on in the first carriage and walking through as it departed…… not a good start to the day🥺

It took the world a while to wake up and we were well on our way to London before I could take a piccie….there was a lovely sunrise in Doncaster but too dark to take a photo from inside the train and the a blanket of fog covered the land…

And the further south we got and the sun was getting higher in the sky it was desperately trying to burn off the fog. It was a lovely trundle with beautiful skies waiting for the sun to win the day…..

Damian had kindly offered to meet me at Kings Cross as Dementia UK (home of Admiral Nurses) have now moved to new offices, so safety in numbers trying to find it!

We trundled off to Aldgate to be met by Toby standing outside. Dementia UK now have lovely offices. Soooo many people arrived that I wasn’t expecting. Some from Twitter, some playmates, including George, Diane and Tracey.

A lovely smiley piccie by George before we all started.

We had an ice breaker from Suzy first…she put cards in the middle of the 2 tables with questions that we each had to choose and answer to the group…..

My question was ‘What helps if you’re feeling lonely?’……my answer……go on Twitter and either look or chat…..never lonely with Twitter.

The group was a mix of people with dementia and those who care or cared for someone with dementia so each went through and said who they were as me and Hannah were new members.

We went through our agreed ways of working……..

Toby took us through the impact LEAP has had over the last year, from advising on content and being a critical friend to the Trustees.

We went through the New Influencing Pack which would enable us to lobby commissioners or simply to promote their existence. Much debate then followed on the language used to describe the work of Admiral Nurses.

We were then joined by Hilda Hayo, the Chief Exec, Steve Jamieson who is a Dementia UK Trustee and Faraday who is about to start a new role in Comms.

Steve spoke about Dementia UK being ready for the ‘iceberg round the corner’…….we have to make sure we employ the right people with the right skills. How do they influence the future of Dementia Care? How can people who make decisions, make those decisions without those directly affected? The louder the voice, the greater the influence, so it’s important to work with groups like TIDE and DEEP and also the major charities.

We saw a film about how they raise money and gave feedback on that. George had the great idea of a voiceover being available instead of reading.
Hilda then spoke about their ambitions as a charity for the next few years. Admiral nurses aren’t all employed by Dementia UK. For example, through Admiral Nurse clinics – 45 minute advice clinics, funded by a myriad of organisations. Some are employed by councils, commissioners etc. Various organisations purchase different services from them – for example, clinics and helpline services.….there’s been some wonderful new services created for those with Learning Difficulties diagnosed and also post diagnostic support.

Within the triangle of support, the bottom part is their leaflets and helpline, the second part could be clinics and the top of the triangle is the specialist clinical support from the nurses.

The ideal would be to have an Admiral Nurse clinic in each Gp practice because they’ve found GPS speaking popping in to ask questions……

Lunch time…..and time for a group photo for their web site and mine!

After lunch George took us through our Workplan. We split into 2 tables to discuss…..understanding how we will influence the new strategy …….it started to become difficult to concentrate and my brain was started to buzz, conversations and voices starting to merge……..but a wonderful meeting, with a wonderful eclectic mix of people, each with their own unique experience of dementia at the table, showing the value of the Lived Experience with Dementia UK.

People affected by dementia should have access to an Admiral Nurse when there’s a need just as much as people with cancer have access to Macmillan Nurses……….a long way to go but some wonderful work being done…..

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We’re not undermining the wonderful work researchers do, we’re saying that we can bring a different and unique approach to research. But we also appreciate the guidance and advice from those professionals who are already very successful in that area……so this is where our three visitors come into play.

Prof Dawn Brooker and Prof Tom Shakespeare arrived…..David was delayed and Simon sadly stood us up at the last minute🤐…….after initial inductions it was lovely to share all our initial ideas with Tom and Dawn…

I talked them through our priority list and it was exciting to see their enthusiasm. Their role is providing their expertise on the barriers, such as ethics and the technicalities of research. They gave their views on ethics……this brought much discussion, much advice, much to think about. Tom stressed the point that published research shouldn’t be the be all and end all as non published research can be equally as valuable. Bridging the gap between research and storytelling…..both equally important

Lunch time….phew!

It was a lovely lunch and further discussion and ideas flowed. We were all overwhelmed by the volume of stuff and even Philly and Rachael were drowning under the amount of exciting stuff that we all wanted to get going……..it was interesting to see how Dawn, Tom and David hadn’t heard of hyperacusis. So we’ve already taught them something.

The first of my senses to be affected, 4 years ago, was my hearing. My ears became very sensitive to noise and certain tones of noise. We’ve since learnt, through amazing work by Agnes Houston that it has a name – hyperacusis. Many clinicians are unaware of the existence in people with dementia and now many of us are being referred to audiologists for a simple test – an ‘uncomfortable loudness test’, which can denote we need personal noise barrier plugs made specially for our ears. It is common in those with autism but not recognised yet for people with dementia…….

After our incredible busy morning we had time for a lovely piccie of the whole group.

We then had just over an hour to completely empty our heads and fill in the 3 prof advisors on the morning discussion. We wanted to hear their thoughts on how they think they can help

I asked for their initial thoughts on what they thought of our plans. Dawn said it’s so important to ask the right question and being clear on our line of enquiry. Defining the research question clearly. Dawn spoke of the expertise available at Worcester.

David said our second most important question was about who we want to influence as that can often influence the methodology. His knee jerk piece of advice was don’t avoid things just because they seem scary. Confront ‘research’, don’t avoid the fact that its research. Be curious. His interest is getting people to use their own voices. He said:

“create a harmonious cacophony of voices”

Tom said to ask how can we get professionals to continue doing this sort of work long after we’ve finished. He is a qualitative researcher with people with learning disabilities and physical disabilities. He can bring a different but relevant perspective. We must prioritise projects which are original and will have the most impact with the resources we have. Use those with expertise – we don’t have to do everything.
Also to ask what’s the value added value bit that we, as this group, bring to research.

“Make everything as simple as possible but not simpler” and “try to find a charismatic idea” said Tom

“ the topic is like a ball of clay, you’re not sure what it will look like but don’t be afraid that you won’t get a pot at the end of it” said Dawn.

All our heads were spinning and it was interesting to hear the fear some of the group had about their capability in this project. The fact that they spoke out about this fear was so good. They almost set the benchmark. If we can get it right for them then we have a chance of succeeding with others in allaying their fears and concerns.

“We believed we could and we did”…..a nice few words from Dory to end the day…….just can’t wait to get going now….

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Innovations in Dementia have a major new project starting called Dementia Enquirers and we had our first meet-up yesterday! It’s testing out a whole new approach, where people with dementia will lead & control our own research, on issues important to us. The Big Lottery has funded the project with a grant of over £500,000…

Philly Hare and Rachael Litherland are our partners in crime and keeping us under control……well maybe……..a hard task for anyone to undertake 😂

It was a very wet murky start to my trundle but at least the train was on time. Bizarrely it was also raining inside the train, causing much confusion and shuffling around playing musical chairs……🙄☔️luckily, I was either getting wet and didn’t realise it or I’d chosen a good seat😊

Rachael was meeting me and some other playmates at Kings Cross before we wandered up to Euston to meet some more…….as it turned out, it was just Carol with Rachael first before we trundled up to Euston to meet Agnes and Dory.

Agnes was busy doing selfies when we found her. She’s found an amazing Tree of Thoughts. Euston station was wanting suggestions from people about how they could better help people with invisible disabilities by posting suggestions on a Tree of Thoughts. So a lovely member of staff was roped in to take a piccie of us all

Dory, Carol, me and Agnes….

We then climbed in a taxi and made our way through very busy London streets to The Royal Foundation of St Katharine – a lovely peaceful haven in the midst of the city hustle and bustle.

Philly, had arrived early to put up some very useful signage. After settling in my room and a much needed cuppa, I joined the rest of the group downstairs bu following all Phillys ‘Wendy’ signs, for a cuppa before supper. Howard, Mhari and Hugh joined us too and lots of conversation and laughter continued.

After a lovely supper I abandoned the group as my head was banging, as usual, and I retired to the peace and silence of my room. My silent community of Twitter, keeping me company.

The next morning, over breakfast, we put the world to rights and laughed sooo much before heading to the meeting room.

We began the session with Agnes leading a few minutes of relaxation which perfectly set us up for the day.

Rachael went through the detail – The big lottery has funded us for 3.5 years. It’s a new approach to research – led and controlled by people with dementia. It will give the opportunity for 16-20 grants so that DEEP groups can carry out their own research/enquiry

At lunchtime we’ll be joined by Dawn Brooker, Simon Denegri, David Crepaz-Keay and Tom Shakespeare – all professionals in their field.

It’s a very unique and exciting opportunity which is actually creating history in the research world for people living with dementia

We need to show the research world that we too can be professional in the role we’re undertaking. Researchers will come through our door instead of us going entering through theirs.

I asked if ethics would be involved and of course if we want to do valuable reasearch that will be taken seriously then yes they would. But what an opportunity for us to go before ethics committees and show them how we all still have talents and need to have our voice heard.

We need to turn research on its head. The Big Lottery were impressed because they like to fund projects which challenge the status quo. Research priorities will be driven by people with dementia.

We spoke of the words we use so as not to frighten some people. The thought of doing ‘action research’ will mean nothing to many. So having conversations with groups and allowing them to decide the words and type of ‘enquiry’ they want to make might be key.

We then had to randomly think of projects that we think would be useful. Soooooo many went on the flip chart……..we were bursting with ideas……wonderful wonderful ideas. 2 sides of flip chart paper……so we won’t be short on projects……..

Over a cuppa tea we then had to choose and tick our favourite 3………but I couldn’t help ticking 5 as there were soo many good ones….my head was buzzing with ideas and excitement…..

Role of the Research Interest Group was up next……again lots of excitement but also fear of our role. We need to work together to find ways of measuring what has changed because of the project.

It’s our opportunity to amaze people in what we can do…..

The final job before our visitors arrived was deciding the logo…….we had 10 to choose from and narrowed it down to 2 favourites………😊

So this won’t be an overlong blog I’ll finish off tomorrow and you can read about what the professional visitors thought about our ambitious aims and how they might help us along the way……….

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I was contacted ages ago and asked if I would be happy to speak at a conference in Wiltshire. At the time they apologised as I would probably never have heard of the place…….it was Trowbridge; a place I lived for a couple of years eons ago – ha! I even still visit as I have friends living there. So I was more than happy to accept the offer as it meant I could stay with my friends.

My journey took about 8 hours 😳🙈 so I went a couple of days before just to have a rest day. I’d come armed with a suitcase of 25 books but luckily really kind people helped me on and off the trains as I struggled to lift it🙄
My day off was taken up by my annual visit to a local garden centre near Lacock that holds a wonderful Christmas display. I wasn’t disappointed and came back laden with a snowman and huge Christmas village 🙄 I got back and suddenly asked the question, how was I going to get them home😱 so it was vital that I had to sell some books to make room🙄

Pam and Kirsty kindly picked me up on a very cold frosty morning and we trundled to the venue at the Civic centre. I was met by David Sheard and Babs from Alzheimers Support. They’d got me a packet of Yorkshire tea just for the occasion 😇

Alzheimers Support’ has the contract in Wiltshire for Dementia services.

I was so thrilled to be tapped on the shoulder by my dear dear friends, Christopher and Veronica Devas. Christopher has trouble speaking now so often sits happily silent but read my badge and said ‘wendy’ which made my day………

David Sheard, the founder of Dementia Care Matters, was up first. His speech was around the family. He asked us to take a moment to say what we thought of the word ‘family’. I said it does not have to mean related. My 2 daughters are the most important people in my life but I also have a ‘family of people with dementia’ It’s people you feel close to.

Today there is a diversity of families……In his presentation he spoke about ‘feelings’and their importance for people with dementia.
“Person centred care’ is difficult to find as the ‘love’ part of Kitwoods flower has become forgotten.

I’ve often said that good dementia care isn’t about the practicalities of care, it’s about, feeling safe, feeling happy, feeling human again.

It’s important to remember that a residential establishment is someone’s home……
Here’s the link to the film

He spoke how the Care Home system needs to change – it needs disruption 👍

Family and Love need to come back into care.

He finished playing the song “We are Family’ and everyone just getting up dancing and singing..

Next up was me……. I followed on from Davids talk speaking about the importance of the diagnosis not being just for the person but also all those around the. Everyone needs support. One bit I said was

“I have a problem with the phrase ‘living well’ it was a good idea some years back as there was nothing else but I’ve since realised from meeting other people that it sets such a high standard that not everyone can reach, so it ends up having a negative instead of positive effect as it makes some feel inadequate. So instead I prefer living as well as you can. It’s so important to revisit language every so often. No, it doesn’t trip off the tongue as easily or fit into slide presentations quite as neatly but it helps so many not to feel inadequate when they’re struggling…… “

It was time for a cuppa and lots of people came and chatted. Pam kindly stood with my books and they were gone in seconds with lots of disappointed people as I only managed to take 25 but could have sold a lot more.

During the tea break I also made 2 new friends

What goes down has to get back up again and 2 people had to help me back up😂

After tea break we heard from a lovely carer, Caroline, who said that since becoming involved in a support group their life had changed for the better. Their group is at a farm and allows them to enjoy the outdoors.
“Being in such good company has enhanced our lives after being isolated and scared.” “It’s opened up a whole new chapter in our lives”

Then a wonderful film showed made by the group.

The Laverstock Memory Group were up next. This is the group attended by my lovely playmates Veronica and Christopher. They meet in someone’s home and people with dementia meet in one room and supporters in another. They questioned whether a dementia awareness session made businesses dementia friendly and decided not.They were given a pot of money by DEEP to go round local places that they chose to assess how good they were. They then hand out a certificate to good establishments.

Wonderful to hear a local group and all that they’re doing.

Up next was Tony Whitney who supports his wife Donna who is living with late stage dementia of the PCA variety, which is more about visual special issues rather than memory. He spoke of the ‘sparkle’ disappearing in the beginning due to lack of support. Other conditions added to the complexity. The difficult decision of choosing a care home was made more difficult by the inconsistency of care. Many were Institutionalised but he thankfully found one where Donna was made part of a family. Her sparkle returned through good support and good care and she has ‘reconnected’ with the outside world.

“Psychological hurdles and barriers can hinder and prevent us from doing things that are normal. New issues demand new solutions…….”………a wonderful talk by a wonderful man about his wonderful wife.

Finally before lunch Babs and Kirsty from Alzheimers support launched Wiltshires Dementia Roadmap. They called these virtual team members. It was designed with the help of people with dementia…..and looks very simple to follow on the slides.
The one page that stood out was the one that said:

Time for lunch as I was now starting to flag…….lots more wonderful things in the afternoon but I just wanted to sit and enjoy as brain disappearing fast so no more typed….EXCEPT the first speaker was a GP who showed the slides of Alistair Burns and spoke of Living well…..the one phrase I spoke against this morning. I didn’t agree with lots of what he said, but then I’m not surprised……..and he, in a room with many people living with dementia, said Donezepil doesn’t work 🙄 …….but was luckily contradicted by the next speaker, Professor of Research, who said how it delayed declined which they’ve proved……..

After yesterday blog, the last workshop, Dr Simon Manchip restored my faith in Consultants in Old Age Psychiatry. A wonderful talk with humour and challenging current views and practices. I sat through it twice to finish on a high.

Really finished now…

Wonderful event and so glad I was invited.lots of good things happening in Wiltshire…..

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On Monday I made the long journey to Bristol. I hate Cross Country Trains so much that I went via London for the journey there.

I’d been asked a long time ago if I would speak at the BRACE annual conference and be interviewed by ex newsreader, Sir Martyn Lewis.

Each year they hold a national dementia conference featuring some of the UK’s leading thinkers on dementia (scientists, campaigners, politicians, care providers) and hosted by former newsreader Sir Martyn Lewis. So it was lovely to be asked to be part of this event.

The journey didn’t start off well as there was much confusion at the first station due to a delayed train, me misreading the information board and being on the wrong platform with a heavy suitcase….🙄. I ended up getting so confused that I got on the wrong train, but all trains go to Hull so I thought I’d work it all out and start again once we got there.

At least the sun was shining……

Once I got to London I went over to Paddington to catch the GWR Bristol train. I don’t travel with them very often, which is such a shame as the staff were very friendly and the seat reservations are much easier to understand than the new LNER east coast system..red for taken, green for vacant – simple……..and in words as well…….simple is often forgotten……

And so I ended up changing in Hull when I didn’t need to but hey ho……each of my connections were on time after that and kind smiley people helped me on and off with my laden suitcase.

But, hey, many hours later I arrived in Bristol and the taxi took me the short ride to the hotel. The Team, including Martin Broach were setting up the room in preparation so I went and said hello to find where I was going.

The next morning I trundled up to the top of the lift and found people arriving. Someone from the Alzheimers Society Research Network came over and said hello and then a Twitter pal came and made herself know – it was the only reason she’d come! Awww, I love Twitter pals……and then even more followed……so nice to see so many….

The conference was called #Together 4 Dementia

I met a woman at the tea stand who said her partner, who was now in a nursing home had spoken out lots about having dementia and still took part in research even though she was now in a nursing home – wonderful. Me thinks that where you are is irrelevant. It’s important that people of every stage take part in research.

It was still quiet as I’d purposely arrived early so lots of time for cups of tea and typing my blog, looking round the stands, before Mark introduced me to Martyn Lewis. We chatted about hotel showers and had to have a piccie

And then it was time to start. The day was being filmed as well, which is always nice.

Mark started off the day welcoming everyone to the Brace Conference. The James Tudor foundation funded the conference ….he then introduced Sir Martyn Lewis. Martyn has supported the Brace Charity for the last 5 years.

He said we were here for the ‘news of tomorrow’………and ‘All research needs to be put into context’ as many headlines offer hope but reading the article offers little evidence. He then showed a very simple video which you can watch here……

Professor Clive Ballard from Exeter Uni, was the first speaker talking about Psychological Symptoms in people with or a risk of Dementia……..he spoke of there not having been any licensed treatment for dementia for over 20 years. He said we’d been very one-dimensional when looking at dementia – looking at memory issues – but maybe we should look further at depression and mild behavioural impairment as markers. He spoke of the research they’re doing with this in mind…… Precision medicine exists in cancer, why not in dementia?

….good that a different angle is being investigated even though they’re at the very very early stages.

Up next was Chloe Meineck talking about her Music Memory Box. She has worked with people with dementia to design the boxes. Each piece from the box is linked to a piece of music. A sensor is stuck on each piece so when they’re lifted out, they play the chosen music. Unlike some things, it can translate to any culture as it’s personalised to that person.

After Chloe came researchers from Bristol Uni talking about their research on Connections between dementia and Oral Bacteria. Sadly I think the presenter was quite nervous or something and I didn’t understand this one as it was very confusing. The theory sounded very interesting re the connection with dementia but I couldn’t understand the detail…shame…

The last session before lunch was me being interviewed by Martyn….
It seemed to go down very well and I finished with my story of Billy……..obviously couldn’t type so can’t remember the detail.

Over lunch I signed copies of my book…….we seemed to sell a bucketful so that was so kind of people to buy it and to say such nice things…..

After lunch it was Tony Hall from Bristol Dementia Action Alliance about the state of play in Bristol.

“Dementia has no barriers and we’re not going to create any”

They seem to do an awful lot in this area and Tony was full of funny tales…….wasn’t quick enough to write them down as brain was starting to shut down…….

Nothing else typed as I was getting very tired and brain must have closed up shop…..

There were people from all walks of life at the conference – local NHS Trust, Community Health, Universities, Researchers, Health Care Service providers and many many more which was so nice to see. I had a wonderful day and met so many wonderful new people…….one person handed me a card during the book signing. I didn’t have time to read it until I was on the train. It was from an Occupational Therapist called Diana and the card thanked me for writing my book. Part of her message said……

”I work in a Memory Clinic ……and have students with me for several weeks. I always give them a copy of your book……….”

Amazing end to an exhausting day………..

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Yesterday found me heading for Leeds Beckett University. I offered to be a monitor for this interesting study on living with dementia and having a diagnosis of cancer. The Alzheimer’s society funded research always have a team of 3 research monitors where possible on each project. Our aim is to encourage, offer advice and sometimes simply listen and share in their successes and challenges faced.

My 2 partners in monitoring for this project are Annabella and Anne

I was very lucky as the student undertaking the project lives close by and so was able to trundle me in her car instead of navigating the trains…..

And so it was that Rebecca picked me up at the agreed time. We had a lovely drive to Leeds and I was able to get to know Rebecca. She’s only just started her PhD and it’s wonderful to be involved with her at the start of her study. Today was her third day!

Her study is looking at the care and support needs of those in residential care homes who have both dementia and cancer.

We arrived at Leeds Beckett and had a cuppa before heading to the room. I was very impressed with Leeds Beckett as Yorkshire Tea is everywhere, even in the student cafe – so I’m glad to see education has got it right in Leeds…..👍⭐️🤓

We were met by my lovely Twitter friend Professor Claire Surr, Dr Rachael Kelley, both supervisors for Rebecca…..and Professor Alan White who has a special interest in Cancer. Can’t believe I forgot to take a group photo🙈

Anne and Annabella soon joined the party and we started off with cuppa teas and cake….

The aims of the project were detailed nicely in a slide

Rebecca’s background is marketing and public relations but has changed tack due to family connection with dementia and brings lots of different skills with her.

The project sits within the Themes of Leeds Becket and come under the theme of Dementia Care and services. It fits in so well with the other studies in hospital and Nursing home settings.

The combination of dementia and cancer throws up so many issues such as pain identification, symptoms being due to cancer or dementia and simply remembering you have cancer and many many more, making caring for someone a complex process.

Rebecca took us through her plans for her 3 years. She was very well organised which is a good start for any PhD!

Year 1 is a setting the scene year

I loved the simple way Rebecca laid out her slides with wonderful piccies to accompany.
I didn’t know what ethnography meant and found out it’s ‘observing’ and knowing what and how to observe but also knowing when to stop.

There’s a limit to the amount of time you have to spend on observing the experience of the person so there’s a limit to how many care homes you can visit so the limit has been set at 3- 6.

PhD students have the advantage of coming from the angle of learning and gaining access to e.g. Care homes, is often made easier because of this and they’re often welcome as long as they see a benefit and value in what’s being researched.

Year 2 – once ethics has gone through, was all about recruitment and had the cutest slide

They’ll also be a lot of interesting gender information that comes out of this. Professor Alan has an interest in gender and told us some wonderful facts which I wasn’t quick enough to type…..

The essence of Ethnography is listening to stories and observing , not interviewing.
Thinking of the location for talking and observing especially when interviewing supporters is important.

We then moved onto the role that we will play as Research Network Volunteers

We went through our expectations and Me, Annabella and Anne all contributed lots of questions and suggestions……there was so much enthusiasm and experience in the room that will be invaluable to Rebecca.

It’s only day 3 of her PhD so I could see her head exploding with the amount of information coming out of the meeting but I’m sure she will be so well supported and hopefully we too can be of help
.
We’re in the wonderful position of going through this amazing project with Rebecca but without the pain of having to do all the work. It felt like everyone, including Rebecca was on a high by the end of the meeting.

Professor Alan also came up with the quote of the day looking at all the cakes on the table……..

“I have a very strong will and a very weak won’t” 🤣😂

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I’m part of a group that meets every now and then for the East Riding Clinical commissioning Group. Nicki Sparling, Assistant Director of Quality and Improvement, asked me ages ago to be a member and yesterday picked me up to attend the latest meeting.

The aim is to co-produce a patient story process that is consistent across all organisations and review how patient stories are used in each organisation and for what reason.

I think I became involved when I spoke to the CCG board around the appalling experience I had when I moved to this area……but I might be wrong. I know I spoke to them about something and can’t imagine it being positive!

We want them to hear the reality of the services they provide from the people who experience them.

We got there and 2 people were already in the room. Nicki showed them the tea machine and went and got me Yorkshire tea in a mug 🤣😂🤣😂……brownie point instantly given……

So, mug in hand, many people didn’t turn up. We were expecting people from all over Yorkshire…..Some had sent apologies but others hadn’t…..never good and so impolite.

Lots more from around the region were supposed to be attending but few actually appeared. I often wonder why? Is it workload, lack of interest?

We started this work a year or sp ago but had to be shelved until now. So many changes going on which took precedence. So today we’re picking up the agenda and hopefully it will be actioned.

The important aim is to support any patients who speak to the CCG, or whose story appears anywhere but the other key important point is for something to come out of the situation and it not become a tick box exercise.

I love the slide Nicki showed

And this applied to the Trust as well as CCG.Some areas use Patient Stories already but it would be good to have consistency and having an open mind as to how we give people the option to tell their stories, both good and bad. Videos, someone else reading out, an article or being their in person……lots of options.

We all gave examples of ideas to gain stories. I mentioned the Willerby Research Team and the stories they receive on the advantages of research. We need to have positives and negatives and the CCG can use them to promote ‘listening’. The ‘You said, we did’ attitude for both good and bad stories.

I said what it mustn’t be is, simply collecting stories – no point in that at all. There has to be a value and an outcome for people sharing their stories.
We got onto the subject of payment for people who take the trouble to attend meetings. The staff are all paid, but the lay person isn’t.
If payment is too complicated I suggested using local businesses to donate gift vouchers and have good publicity for them as well.

After another cuppa tea had arrived…(everyone else pointed in the direction of the tea machine…..😂😇, )we went on to talk about the next steps.

As a CCG, they don’t have direct contact with patients but other providers will already be doing this so we need to tap into others already doing this – no point in reinventing the wheel……we want to establish principles and a process that each area can use…..
It can all revolve around permissions and sharing those stories.

2.30pm arrived and I was flagging after such a busy few weeks…..and no more typing exists.

But one final thought came out on how to describe the CCG to people who know nothing – a bag of money…….at the top of a picture and being handed out to hospitals, GPS, and all other services until the bag is empty…..It’s whether the money has been spent in the right places that matter🤔

As Nicki said at the end:

“The Patient Story is the start of the process, not the end…..”

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After a bad few down days with dementia. On Wednesday I found myself on an afternoon trundle ready to speak at an event on Thursday morning in Salford. Sometimes it’s the ‘doing’ that pulls you out of the fog……

Researcher, Tracey Williamson, asked me back in February if I’d like to attend the end of study conference. The research had been going on for the last 3 years and they had been researching people with young onset dementia and their families/family carer’s experiences of health and social care services which are sometimes aimed at people in later life.

They’d already been to my house and recorded my talk, just in case I was having a bad day, so I felt like I knew them. They’d recorded me reading my talk, answering their questions and reading an extract from my book.

The conference was due to start earlier than I could comfortably get to Salford, so they’d kindly agreed to put me up in a hotel the night before…..hence the trundling starting on Wednesday afternoon!

Anyway, it was a gloriously sunny afternoon and I was able to catch the village bus and pop into Sarah’s for a cuppa before going for my train.

Tracey has agreed to meet me at Manchester station and take me to my hotel and amazingly my train left on time! It was sad to see the blackened sight of Saddleworth Moor as we sped past but even more clear was the acrid smoke that filled the train as the doors opened and stuck to the back of your throat……what it must be like for the firefighters in the thick of it, goodness knows…

Tracey was there as promised and we got a taxi to the hotel on Salford Quays – I had a lovely view of the water from my window

An even bigger surprise was the news that Joy Watson, who also lives with dementia and from Salford, was joining us for supper – Joy only came out of hospital a few days ago but was adamant she was going to join us and no sooner had I arrived, we were having supper and time for a selfie…….I rarely go out in the evening but couldn’t resist seeing Joy.

Chris Seward picked me up from the hotel in the morning and drove me the short way to the venue at Salford Uni where I was met by Tracey, John and a cuppa tea. I was soon joined by lots of new playmates with Young Onset from the Salford area, including Joy!!

Tracey started off the day with the normal housekeeping and then it was me to open up the day……..I said:

“I’m not saying that it’s plain sailing because it quite clearly isn’t but if you look at a diagnosis as a new way of living, a life of adapting, it can make life much calmer and a little less stressful.”

And I finished off by reading an extract from my book about my glider flight.

There were many lovely questions, one of which was:

“if you had to choose one type of support from the moment of diagnosis what would it be?’

My immediate response was peer support – the opportunity to talk to people going through what I was.

People were very kind in their support.

Tracey then spoke of the study itself and gave a history of it from the beginning. They had an Advisory Group from the start, some of whom were my new playmates in the room.

“Research is messy” it never goes to plan, said Tracey. It’s always about adapting and being creative. Just like living with dementia really!

It was then the turn of Luisa Rabanal to talk about the experiences they found in the study from people with Young Onset.

The participants were solely from the Salford area.

The findings were 4 main themes – the process of diagnosis, the impact of living with YOD, the needs and living well. Luisa gave quotes from the participants for each theme.

People got a lot of leaflets, a lot of information but it was face to face they needed at this time.
Most of the participants felt peer support was the key to help them feel safe with dementia. To see others who are further down the line and still ‘doing’ was inspiring for those at the beginning. One great quote from someone was:

“If I keep moving the dementia can’t catch me”

Not everyone has a positive attitude so we need to find ways to help them through practical coping strategies….

She showed a great summary slide

Luisa then moved onto family carers – as the research included them as well. I always say that our needs are equally important but our needs often run in parallel and never meet.

There are close to 700,000 people in the UK acting as primary carers and save £11 billion in care.

unsurprisingly, carers also said how leaflets were pointless and face to face support was also needed for them too. They have the same needs but for different reasons and again, a supporter of someone with Young Onset has different needs to those diagnosed later. Another great summary slide…

Now time for a cuppa tea👍

Followed by the turn of my new playmates to be on stage talking about their part in the Advisory Group from the beginning.

It was then time for lunch and for me to get to know some of my new playmates better, including comparing bruises where we wobble, lack of sleep and lots of laughter!

After lunch it was the turn of John Chatwin to talk about the experience of service staff and the final interviews.
They interviewed 25 staff in a range of services…..think I got lost in my little world at this point, as me thinks brain shut down must have started as I seem to have stopped typing….I’m sure it wasn’t anything to do with John!

I’m sure there was lots more but……🙄

Salford appears to be a good area for services, although they need to be more focussed when addressing the needs of those with Young Onset.

I was well looked after and everything taken care of in a timely manner with no uneccesary stress – thank you Tracey – and I shared a taxi back to the station with Luisa, which was lovely.

On the journey home it was sad to see the helicopters above Saddleworth Moor still trying to put out the fire……….and our train was delayed……..a train decided to break down in front of us…..🙈😴🤯
I might have got home with a banging headache in tow and later than I should….but dementia hadn’t won today……..

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Yesterday I trundled on the bus to York for a different meeting for Minds and Voices, my peer support group in York with the most wonderful playmates.

It was a lovely fresh, sunny morning and many of the town cows on the Westwood hadn’t deemed it late enough to stand up yet and looked like they were just waking up – they looked like I felt, very tired……..I felt a tad out of sorts today, but knew seeing my playmates would bring back my sparkle……

The aim of this different meeting was to find out more about Admiral Nurses, who are in York and my area…..

Admiral Nurses hope to be Nationwide and are specialist nurses supporting families where a person is living with dementia.

I loved the way that Damian wrote on the invite how the day would start with the ‘obligatory cuppa tea’………..mmmmm, perhaps he knows I’d never go anywhere that didn’t start in this way………😂

Anyway, the taxi and the bus were on time and I arrived in York early enough for me to have an amble in my favourite city in the peace of the morning before heading to the venue.

There were lots of surprises when I arrived as Jean Tottie appeared, from TIDE, Toby, Suzy Webster, Diane and Maureen immediately appeared – I was only expecting George Rook! So a wonderful bonus.
They are all members of LEAP – Lived Experience Advisory Panel for Dementia UK.

They wanted to hear what we do and we wanted to hear what they do and how we can both work together to bring Admiral Nurses to our part of the country.

Suzy did an ice breaker with pretty cards. We had to choose a card from a table that appealed to us and then talk about why we picked it to people next to us.

I initially chose a bright sunflower but then Jean Tottie persuaded me to have this one…for some reason….🙄…..should have been an ipad…🤣

We all then went round and said who we were and whether we were from Minds and Voices or Dementia UK…..as there were 9 from them and 13 of us – marvellous 👍⭐

The picture cards were a very good ice breaker as the minute we’d chose our cards we were all relaxed and animated and chatty around our tables – wonderful

Suzy, went through the agreed ways of working in the meeting – no ground rules, as we like breaking rules too much.😂

There was a moment of panic when Elaine decided to pass out but all of Minds and Voices didn’t bat an eyelid, 😂, but the other people were reaching for their phones and 999 sprang to mind. Of course, we’re all use to it and knew Elaine just needed some fresh air…….🤣 bless….

It was then Rachel Thomson’s turn to talk to us about Admiral nurses and she started off with their wonderful film – Together Again

Eddie asked what the connection was with the Navy and Rachel told him the history of Admiral Nurses…..the Levy family set it up when nothing was there for them…..they have about 240 nurses around the country. Elaine was asking, why doesn’t anyone tell you about Admiral Nurses?

Everyone in Minds and Voices, especially the couples in the room were all the same in their thinking – how they would love to have an Admiral Nurse in their lives……

After lunch and a cuppa, we had 5 minutes from Toby saying what LEAP do and 5 minutes from Damian saying what Minds and Voices do.

LEAP have only been going for just over a year and it’s aim is to advise Dementia UK. There are 14 people with dementia and affected by dementia on the LEAP board. They want to hear our views as an established group of people with dementia – as a group LEAP have advised on Dementia UK website, on factsheets, on a survey, the media campaign of the film that we saw earlier.

Sadly I then had to go as my buses now don’t coincide properly for changes……which is a real bummer……as I missed the important bit of the roundtable discussion for how we can help.

It’s such a comforting service where you see the same person each time – and it’s such a shame there are none in York or my area……….Admiral nurses often help to avoid crises……not rocket science to see what a valuable resource they are..one of the aims today is to find ways how we can work together to bring more pressures on the powers that be to see the common sense in the provision of Admiral nurses. After all, we have MacMillan Nurses are the norm for people with cancer, but once again people with dementia miss out…….☹️

One of the special moments of the day was when Jean Tottie from TIDE gave me a pressie….

Really must put this in a frame…😍

Another of my special moment of the day was finally managing to capture poppies in the field. I saw a field the other day and was disappointed not to have my phone to hand to snap its beauty but today I managed it, albeit only a few in the field but still a glorious sight. I like nothing more than seeing a field of poppies, not as common now as they used to be so always sheer delight.

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After the wonderful day at Minds and Voices in the morning yesterday, I sadly had to leave them all at lunchtime to carry on having fun without me🙄. I had to head down to London for the Alzheimers Society 2 day Annual Conference. Travelling from York meant the train was direct and no stops…….☺ and I was being met at the station by research playmates, Barbara and Sandra. We were arriving the evening before ready for an early start on Tuesday.

The 3 Nations Dementia Working Group were opening the Conference with 45 minutes to set the scene, so I was excited about seeing everyone.

Anyway, the train was on time in York and we trundled down at full pelt. As I was getting up to get ready to get off the train, the woman who’d been sat opposite me asked if I needed any help. I said I was fine thank you and she shocked me by saying.
“I’m halfway through your book, you’re Wendy Mitchell aren’t you?”……😳 ………crikey, how lovely……..

I could see Barbara waiting at the gates as agreed and it turned out we’d been on the same train😮……Sandra joined us soon after. Me and Barbara couldn’t have set off on our own as we were relying on Sandra to know where she was going🤣

We found the hotel and immediately decided to have a cuppa, only to be joined by 2 other people followed by Prof Murna Downs from Bradford Uni……..but the day had taken its toll and all I wanted to do was chill in my room so I left them all to it……..

And so to the first day of the conference…..apparently 500 delegates were due there 😳

After the last hotel in London, which created a new tube stop on the map 😶 – this one was lovely and peaceful, just need to teach my eyeballs how to sleep again🤣.

I met everyone else down in reception to walk through the busy, crazy London streets to our venue for the 2 days – The Oval Cricket Ground. Some kind person walked with me as the volume of people and noise was overwhelming….

But we made it to the Oval

And then the chaos started, but people came up and said such lovely things and some simply to say hello which was wonderful. I finally saw the 3Nations stand in the corner and made my way to have hugs from all my playmates.

Broadcaster, Fiona Phillips introduced the day and went through the normal housekeeping stuff, and Kathryn Smith, Chief Operating Officer welcomed everyone to the conference before Fiona introduced us – we went on stage in 3 batches to do our bit so we could sit down with the mic.

Keith and Chris gave us a recap of the The Dementia Statements stating how 2 words were previously missing, ‘Rights’ and ‘We’…..
Chris went through the review process and started by saying ‘How everything is changing but nothing has changed”

It was next the turn of Joy, Tommy and Nigel and Nigel started off by talking to the audience about Human Rights.

Tommy ended by saying ‘I got a DNA test today and I was shocked to discover that death is hereditary in our family” Cracking Tommy🤣

It was then me Hilary and Keith (who was representing John who is ill) and we finished off by stating what people can now DO. Part of mine was:

“There comes a time in any campaign for change, when enough is enough. When words and good intentions become meaningless promises.”

And Keith and Hilary finished off our session perfectly …….

Before a much needed break it was the turn of Sir Simon Lovestone talking about BIG DATA…..using data we already have to accelerate drug discovery…..

Data from electronic records, especially as GPs move from paper to electronic storage. So much data that could help reach dementia. The data given to studies can be used again and again and again – why collect this all over again when it’s already there……..

Well, personally, I never imagine in a million years that data wouldn’t be re used………if patients have given consent, or opted out should they wish.

The good news he gave was the indications found in some research of finding drugs to protect against Alzheimers…..similar make up to drugs that already exist and adapting them……..that’s where I’ve always thought research should focus…….

So then it was a much needed cuppa tea time but first time for a photo with Fiona

I was due on our stall to sign books. So many kind people came up and said lovely things and many books were sold, for which I’m very grateful………..there were so many people that when I next looked up everyone else had gone to the break out sessions and I was due to be watching Young Dementia UK…….I did wander round for a while, but just couldn’t find the room…..☹️ so missed it. Instead I went to the quiet room and took piccies

Joy joined me eventually and then lunch arrived, so we were able to get in before the crowds arrived – perfect! Dr Jennifer Bute joined us along with Hilary, Tommy and Joyce. A lovely lunch of chatting before heading back to the hoards.

I then joined in the session introduced by Dawn Booker. PhD Students from the Doctoral training centres around the country, had 7 minutes each to take us through their study……wonderful to see enthusiasm as well as nerves in these amazing future leaders of research……..one showed a slide that said:

“When you stop taking risks, you stop living life” – wonderful😊

At the end all the students came on stage and I Was allowed to ask one question….

“If you were advising students starting out with their phd, what would you advise them to do or not do”

All of the wonderful students gave an answer and one that stuck in my mind was:

‘Talk to as many people with dementia as possible”……..now you know why students are my favourite people, our hope for the future…..

Brain apathy had now set in as it’s been an overwhelming day………I’m sure the rest was wonderful…..but one thing that made me sit up and wake up was when Minister of State for Health and Care Caroline Dineage MP spoke…….and sadly they seemed just ‘words’ and promises…….she said all the right words in all the right order…….but I’ve heard the words before. Brownie point will only be gained when the words are turned into real ACTIONS………

No more typed words, so I guess my brain went on automatic and disengaged from my fingers…….Day 2 tomorrow……